Grief: Words Fail

blackboxThere are a lot of things to say about grief, and I had a much longer post planned for today. But words fail me on this. And as a person whose only outlet is words (as opposed to work, socializing, or physical activity), this is particularly frustrating. Here’s what I know, eleven weeks into this process:

Grief is not what you expect. Mom was one of my best friends. I talked to her every day. I helped take care of her for the last two years. I can’t imagine anything that could have improved our relationship, with the exception of better health that would have allowed us to do more things together. I could not see past the moment of her death. How could the world keep going, how could I exist, once she was gone? But the world is going and I exist, and this surprises me every day.

Grief is physical. I don’t mean in the stab-in-the-gut way when I miss her, although that happens too. I mean that I have not physically recovered from this loss. Mom died eleven weeks ago, and I am not back to Normal Shitty Baseline.* I am on the verge of crashing every day. I am not thinking clearly. My temper is short. I have trouble completing tasks and my memory is shot. I’m having trouble separating what is disease process and what is grief process. Even at Normal Shitty Baseline I have days when I can’t get out of bed or cook dinner or a thousand other basic things. What is normal in grief, when your normal is already shitty?

Acting normal is expensive. I look and sound normal (normal for me, anyway), but at great cost. Yes, I’ve been writing blog posts. But you don’t see how difficult it is, how writing these posts takes every bit of energy I have, and more. I’m running on the fumes of my fumes, at this point. Every single email I answer, ever document I read, every paragraph I write – it takes so much more effort and determination than before. I don’t usually talk about how hard it is for me to participate in advocacy, and I’m not even showing you the full cost now. The best analogy is that it feels like I’m hooked up to multiple IV lines, but the energy is running out rather than saline running in.

I’ve discussed all this with my doctors, and been reassured that this is “normal grief.” I am lucky that I have no regrets, and I don’t mind paying the price of grief for the happiness of my relationship with Mom. We have a close family, and everyone is supporting each other. I’m just trying to stay in the moment, ride the waves of emotions and be gentle with myself.


*”Normal Shitty Baseline” was coined by Trina Berne, and it’s the best description ever.

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21 Responses to Grief: Words Fail

  1. Nita says:

    I am sorry for your pain and loss. I wish I knew words of comfort that would be adequate. So very sorry.

  2. Laurel says:

    I know just what you’re going through, Jenny. The only way out is through, and it’s hard. My heart goes out to you.

  3. Deborah Waroff says:

    Jenny, I am so sorry.

    I just want to mention that your loss of energy seems not at all exceptional and I believe there is a factor of strong physical reaction — I mean mitochondrial, not a byproduct of “feelings,” — to grief, which scientists have yet to investigate. When my erstwhile Auntie Mame (technically my mother’s first cousin) died about six years ago I was astonished to find how dramatically it affected my Sunday morning tennis doubles (for which of course I normally paid with the rest of Sunday and all of Monday down and out, stupid me) in a way that quite beyond loss of concentration. It was a real physical phenomenon — a question of muscle malfunction unlike what I might have experienced from an emotionally fraught spell or an incipient flare-up in “illness behaviour.” (Any notable flare in illness behaviour and I just plain cancelled of course as there was usually a sub to be found.) Of course I also noted the energy drain off the court, but there is something about the limited range of motions in a game that makes the displacement more evident and easier to measure.
    Aside: An anthropologist friend of mine died in November, 2013 near the Andean community she and her family had lived in and participated in for many years. Via photography and her daughter’s beautiful descriptions I learned how tactile and expressive — visually, musically, in speech and in movement — the experience of grief can be in a traditional society. Us “civilized” folk do rather expect to experience it from the neck up, which I don’t think is the whole human deal we’ve evolved to.

  4. Nancy Henson says:

    I understand grief all too well. After 53 years of marriage I lost my husband in November 2012. I asked my primary care doctor “On average, how long does it take for the worst of this grief to pass?” He said 18 months. He was right. At about 18 months I was a basket case much like you described. I’ve had ME for over 30 years so losing my Mom of 93 three years before losing my husband seemed to multiply the grief process and what it was doing to my already depleted body because of ME/FM and other aging health issues.

    And now I’m moving into an Independent Living Facility later this month and I’m having a terrible time getting packing done because of pain and fatigue. I’ve learned to stop before I’m running on fumes. The worst part is that my son and DIL who are helping me with the move have no clue how I suffer. Its me and the Lord.

    You’ve just lost your mom so you need to take better care of yourself because there’s nobody else to do it for you. If you don’t, the process will take longer. Of course, that’s just my opinion. But I have a feeling I’m not too far off. Hundreds of memories come flooding black as I go thru papers, greeting cards, gifts, etc. They all stab my heart a little more.

    It will take a while once I get settled in because a new place will mean new and unexpected adjustments I’m sure. Again, I will as I tell you take care of me as best I can. I have an altered sleep schedule as many of us do. I’m up late and sleep late so I’m getting one of those Do Not Disturb signs made up for me.

    I offer my condolences as I should have before I started writing. Losing a mom is a great loss. I was in shock when I loss mine as I’d just seen her a month before (she in NY and I live in NC). She was still driving, taking care of her house, etc. But the night before she was to moved next door into an apartment with my brother, she died in her sleep. She hated the idea of living with someone else.

    Please, take care of you.

    My best regards, N

  5. Pat says:

    Jennie, I’m so sorry for your loss. Having lost both parents and two sisters, I know that grief is manifested both emotionally and physically. There is no time limit for grieving as it tends to reappear again and again over the years, and feel as raw as the day of the initial loss. Sometimes “running on fumes” helps to feel some sense of normalcy. Other times cleansing tears are the only way through. Be gentle with yourself, whatever it takes for however long it takes. That hole in your heart will never disappear but precious loving memories will begin to surface more easily as time goes on. I find that the times of cleansing tears are now followed more quickly by memories with laughter. May you find the same to be true.

  6. Carollynn says:

    I am so sorry for your loss, Jennie. I hope that sharing it with this caring community brings some comfort, though I know we can’t give you ease. Long before I got sick I practiced A.M. Yoga with Rodney Yee, and so often since getting sick something he says on that video still helps me, that each day we “observe and accept the present state of the body-mind” without judgment. Just being with what is, and in that being able to choose how to best care for ourselves that day. I also find comfort in Toni Bernhard’s writing about how our suffering unites us with all others. I don’t know why it helps me to think of people far away, in beds and on cots quite different mine, laying in physical or emotional pain, and how we are the same, having this human experience even if the current moments (hours, days, weeks, months) are so difficult, uninvited and unwanted. There is a strength in being in that shared present moment that can carry me through the worst times. whatever their cause or causes.

  7. Marilyn says:

    Hang in there Jennie. It will get better. The closer you were to your mom, the more pain. It sounds like she was a gem. We’re thinking of you and sending you good wishes.

  8. Lisa says:

    Dearest Jennie,
    I truly feel for you and your loss of what sounds like a very special relationship with your mother. I agree with all the comments above. 11 weeks it’s still so fresh. I lost my father in 2011, my mother in 2012 and a dear close friend suddenly in 2013. I lived with my parents for most of my life and I am 49 because I can’t work. A lot of changes like moving to a much smaller place, being on such a small fixed income from SSI and family who think I should ‘get over it’. Also it’s’ all about me all the time’. Just because I lived with my folks so I wasn’t homeless I am spoiled. There was hardly any money to leave and yet some of my sisters who have work or working husbands are resentful that I got left a little to just exist on. Enough about me. My point is there is no timetable on grief and yes it will manifest itself in the body in many ways. Especially for us. So if you are able to financially I encourage you to be gentle and patient with yourself as far and what you feel you have to do physically , mentally and physically.
    I was blessed that through the hospice company my parents were on that they still let me attend grief groups although the official contract and time period was up last year. I think that they know and believe that do to this shitty illness I haven’t been able to get out hardly at all and attend the groups on a regular basis. So they have been helpful for me. If that sounds like something you’d like to check out, you might google and see if there is one in your area. Lastly, thanks, thanks, thanks, (As my dad used to say when people would come to visit) . I cannot begin to imagine all that it takes for you to do all your doing for us and this cause. If you can’t write one week or longer
    don’t you think people would understand? I hope you take care of yourself first and then see what ‘credits’ are left. I appreciate you and will keep you in my daily prayers. With love, Lisa

  9. Kathy Mero says:

    I am so sorry for the loss of your best friend and Mother. It must be awfully hard. Thank you for writing this post about it. My aging parents (92 and 94) are doing OK now, but inevitably, the time will come and it’s really hard just knowing that. I try to enjoy them as much as I can, but my health doesn’t allow for as much as I would like.

    You advocacy work is amazing! I don’t know where you find the energy even at your ‘Normal Shitty Baseline’. In your grief, I can’t imagine how much it hurts your brain and your body to think about the complex issues you write about. Do be gentle with yourself, take care, and grieve on your own time table.


  10. Chris says:

    Jennie, I am sorry you are still going through this pain. But it is a tribute to both your mother and yourself that you feel it–she was evidently a real person, and her presence is sorely missed. And you are a real person too, capable of deep and true feeling, and that feeling for the time being is grief. I trust that it will slowly, with time, change, but time takes its own time.

  11. Betsy says:

    I’m so sorry for your loss Jennie. I lost my mom 4.5 years ago – she’d lived with me for 16 years before she died and I still miss her every day. It’s just darn hard Jennie and I’m sorry you’re having to go through it.

  12. Tillie Clapp says:

    My heart goes out to you. I cared for my mom for several years before she died, and it helped me with the grief. You will always be glad you did what you did for her. Now try to pretend she is beside you, and listen to the counsel you know she would give you. For she will always be inside you….

  13. Peggy Kühl says:

    Thank you Jenny for sharing Anyone who says they know how,how jo w you are feeling is crazy and wrong. they dont. even if they lost a parent. we all grieve differently.You take care of yyou. We’ll be here when you feel like you can advocate for us or support our collective feelings to the bozos that are over at the NIH CDC etc….You are a remarkable woman &handle yourself with class and integrity.That is why we all respect you the way we do.Wishing you sunnier days, PeggyK.

  14. Sasha says:

    So sorry to hear how you’re feeling, Jennie. ME is plenty bad enough without having to deal with such grief on top of it. Please take very good care of yourself and put yourself first and your advocacy and emails and all the other stuff second for as long as you need. People understand.

  15. Janelle says:

    Dear Jennie,

    It’s ok for it to be hard. And to take more time.

    It really is.

    Thank you for sharing as much as you have, and take care of yourself as best as you can.


  16. Jennie, by sharing your grief, you have awakened in me the need to express my own grief. I have put it on the back burner. Sometimes I think we do what we do so we don’t have to think about our illness or our grief. We should be good at it, after all, living with chronic illness is a grieving process, right? WRONG! When it comes to a mother who was our greatest champion, the one that loved us and was proud of us no matter what we achieved, despite our frailties, despite our mistakes, their absence in our lives leaves us with having to depend on what our personal hero, our mothers, would do in a certain circumstance. No longer a phone call away. We take on a new role, the one our mother showed us. I think the best tribute I can give my mother is to approach life like she did. Love well, love unconditionally. That is exactly what you are doing by sharing your most intimate feelings. I miss my mom calling to ask how I was doing. Only SHE knew the anguish I experienced living with chronic pain and illness. I do find comfort in knowing I had the best mother. She is the one that instilled in me to desire to help others and to keep on trucking no matter what life threw my way. It is an honor to know someone who, like you Jennie, is unabashed by what others think. You are a testament to the values your mother must have instilled in you. My heart is with you and I pray you find solace and peace in your time, in God’s time. There is purpose. We don’t always see it, but it will be revealed one day. I must believe that. Much love and gentle hugs dear heart. Celeste

  17. Donna Stonehocker says:

    Hi Jenny. I so admire your courage for sharing your grief. I don’t know if you believe in God but He does so care and I will be praying for you. He loves you very much.

  18. Jennie Spotila says:

    Thank you. I just wanted to get my feelings out, and it has turned into an incredibly helpful and supportive experience. I am so grateful to every one who has posted a comment or reached out to me by email. Grief is something that simply cannot be navigated alone. Thank you.

  19. Kathy D. says:

    I’m very sorry about the loss of your mother. Grieving for parents takes a long time.
    It took me months to deal with my mother’s death in August 2012; then a crisis
    happened which sent me back to the beginning and I grieved all over again.
    It just has to be felt. These are one’s closest bonds, the loss of the people who
    nurtured you and whom you’ve known your entire life.
    One thing though is that my ME/CFS symptoms worsened during the
    beginning of the grieving period, and then flared up when a crisis happened.
    So, the emotional stress does increase physical stress and symptoms.
    So, it takes a lot of rest to get through this period and being good to
    yourself and doing whatever you need to do.
    Your hard work on behalf of the ME/CFS community of sufferers is
    so incredible that it must be tiring, so know that you can rest here, too.

  20. Amy says:

    I just found your blog. I have a feeling oI am very sorry to read of your loss. I admire you for continuing to write through this difficult time, and I’m very grateful that you are. Thanks.

  21. Waiting says:

    Jennie, I’m so sorry for your loss. Your post and all these wonderful comments are among the very best I have read on the subject of grief. And yes, it is a much more difficult process on top of ME/SEID.

    I just find myself thinking about how immensely proud your mother must have been of you — her strong, brave, intelligent daughter. You accomplishments pre-illness and, incredibly, post-illness, are really something.

    Be gentle with yourself. Just rest for now.

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